Will improving my symptoms on my own impede diagnosis?

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milknhoney

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I should probably wait until I know more but it's another month until my next rheumatology appointment and I'm tired of waiting!

Will try to keep it concise... about a year and a half ago I discovered alopecia areata. I went on the autoimmune paleo diet (AIP) to reverse it and I am happy to say it helped a lot, as well as resolved digestive pain and restored a lot of energy! I was feeling awesome until about a year ago I developed pain under my rib cage. Both sides, mostly in the front but it jumps around so sometimes one side, sometimes the other, sometimes it moves from the front to the sides. At first I thought I had reintroduced a food I shouldn't have, went back on the strict version of AIP but it didn't change a thing. I spent a lot of time chasing a diagnosis with gastroenterology, so I know it's not IBD or my gall bladder. Discovered I have exocrine pancreatic insufficiency and started enzyme treatment, but that wasn't the cause of the rib pain. I found a new primary doctor who agreed to give me a full thyroid panel, tested iron levels, tested various markers for inflammation and autoimmune. All tests normal. Ordered a back x-ray which showed mild scoliosis. Went to a PT who untied some major knots in my shoulder blades but could find no cause for the rib pain. Doctor referred me to a rheumatologist as my one positive blood test was for HLA-B27. I finally saw him a month ago and he does not think I have an HLA-B27 related disease. He ordered a chest X-ray and the same inflammation/autoimmune bloodwork I already had done that was normal. I've called several times to find out the results and each time I'm told someone will call me to tell me the results but so far no phone call! I guess I'm waiting until my January follow up appointment to find out but I'm assuming it will be normal. He also gave me a script for celecoxib to help with the pain, but it doesn't do anything.

Since the rib pain started, I had more symptoms develop. I have muscle pain. At first it was in my legs. I woke up and felt like I had just started a new workout routine, except I hadn't. I also get pain in the bottom of my feet. My family went to Disneyland and the walking was just horrible. They were burning and I was constantly having to stop and put my feet up. I occasionally get pain in my pelvic area. More recently, I started getting aches in my arms. Oh, and I am almost always sore in my neck and shoulders. Sometimes I have pain in my hips. Sometimes I have pain in my knees. Recently, I woke up one day and felt like I had pulled a calf muscle, but I hadn't done anything to cause that. One day last week I got the most horrible pain in my arm. It was deep pain, almost like it was coming from my bones. It radiated up from my elbow to my shoulder, then it switched and started radiating down to my wrist. Back and forth. I took one of those useless celecoxib caps and it did nothing. I cleaned my house last week and by the time I was done I was absolutely at the end of myself. I fell into the bathtub for an epsom salts bath and then had to lay on the bed for two hours before I could do anything else. I also get headaches, which normally coincide with red/dry eyes. All of these symptoms come and go. Most of the time I am not experiencing them all at once. They just take turns bothering me. Sometimes it will just be a few hours. Sometimes it will be weeks.

I started doing Pilates every morning. Usually just 10-15 minutes, try to do 30 on the weekends. It helps tremendously. Sometimes it seems like my muscle soreness is a direct result of the workouts. However, I've been pretty consistent for several months so seems like at some point I should have stopped experiencing the exercise-induced soreness.

Given that everything appears "normal", I've arrived at the conclusion that I must have fibromyalgia. I guess there's always the chance that my last bloodwork and x-ray show something that wasn't showing before, but for now that's my working assumption until I have my next appointment and am told differently.

So after all that, here are my questions! First, does my description sound like fibromyalgia to you?

Second, I have primarily musculoskeletal symptoms. I do experience fatigue, but ever since starting the paleo diet, that has improved quite a bit. I have some sleep issues - waking up super early and not falling back asleep, but I also adjusted my bedtime earlier which allows me to get 7-8 hours most nights. I don't have any cognitive symptoms as far as I can tell. Can you have fibromyalgia with no cognitive symptoms, minimal sleep issues, and manageable fatigue?

Third... not sure how hard to try to feel better before my next appointment. I know that sounds weird. It's just that I would like to have a diagnosis, and I'm worried that if I successfully control my symptoms, it will prevent a diagnosis. Two years ago my fatigue level was unbelievable. It's pretty manageable now, but I'm sure that if I went off paleo that it would come back. So in my opinion, fatigue is definitely a symptom. Would a doctor see it that way, though? Same with sleep. I have issues, I just also happen to be managing it okay so the impact is not so bad. The area that I am having the most difficulty is pain/soreness. Pilates helps a lot but not always. I've been doing a lot of research on other strategies/supplements to try. The question is, do I wait until after I have seen the doctor again? On the one hand, I really want to feel better. On the other hand, I'm afraid to.

Final question is - having ruled out thyroid, anemia, and autoimmune disease, what other disorders will I need to get tested for before fibromyalgia can be diagnosed? Is it wishful thinking to hope the rheumatologist can solve this and I won't get referred to yet another specialist?

Thank you for reading this long post. Any insights appreciated!
 
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Hi milknhoney,

You may have fibromyalgia, or you may not. Some of your symptoms sound a lot like it, as I am sure you know. But there are many other disorders that also cause the same symptoms. The best way to come to a diagnosis of fibromyalgia is to rule those out. To find what those are you can simply look up "disorders and diseases with symptoms similar to fibromyalgia" and then see if you can get tested for any of those that could be happening.

The blood tests being normal and other tests as well doesn't necessarily mean you have fibro, if you have not been tested for other things that could be causing those symptoms.

You are already doing some things that help you. Keep doing them. And see my post (below) for other ideas that may help you as well.

I see no reason to stop doing the things that help you in order to feel as bad as possible when you see the doctor next. You can tell them what is going on for you and what is helping, and how much those things help, and where in your body it helps. This will inform the doctor to better know what to test for next. For instance, if doing ABC helps a certain kind of pain that couldn't possibly be helped by that if you had XYZ, then maybe the doc can pass on doing the XYZ test. The more information you give the doctor, the better.

If you need to see another specialist, do it. I know it can cost money, but this is your health and well being we are talking about, and without that you don't have anything else. Do what needs to be done to find out, if you can, what is happening in your body.
Best of luck, and let us know how it goes.

 
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If you need to see another specialist, do it. I know it can cost money, but this is your health and well being we are talking about, and without that you don't have anything else. Do what needs to be done to find out, if you can, what is happening in your body.
I completely agree with this. Do whatever it takes to find out.

I was given a FM diagnosis this past July... after ruling out other things, such as RA, Lupus, Lyme, etc...

That said, I swore for years that I had low thyroid symptoms, but my thyroid tests always came back in the "normal" range... funny thing about the "normal" range is that while it covers roughly 95% of the population, what is normal for one is abnormal for another. Not to mention that many recent studies suggest that the range should be narrowed - the sticking point is by how much.

I was told my tests were "normal" for years, despite having all of the classic symptoms of hypothyroidism (except goiter)... in 2010-11 my TSH was around the 2-2.5 mark, which is where the greater majority of healthy people are... the last couple of years it has been on a steadily increasing trend until finally pushing past the top end of the "normal" range... (i also found a doctors note in my history from 2013 that mentioned the potential of hypothyroid, so... maybe i am not crazy after all?)

September was my annual physical time... TSH came back slightly elevated - doc scheduled another lab draw for Nov, and that one came back elevated a bit more.. so, yes, i do have low thyroid function (gee, i told them this years ago) and am now on meds for it.

My point here being that you should not accept the standard answer of "your tests are normal" - get the numbers!

My reason for sharing all of this is that many of the symptoms of hypothyroid are similar to fibromyalgia, but there are a couple that are not, and I did have those as well. Same goes for many other health issues - so when comparing notes make sure you are looking at the symptoms that are not in common.. do you have any of those symptoms?

and last, but not least.. FM can co-exist with many other things, so keep up the search until you find all of the answers. If/when you do get an FM diagnosis, dont make the mistake of putting new symptoms off on it.. new symptoms should always be checked out to make sure there is nothing else going on.
 
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Thank you sunkacola and cookiebaker for your insights.

I finally got word on my most recent labwork and xray... normal. I haven't seen the actual report yet but I do have all of my others. And I'm a horrible Googler so I know what all the numbers mean. I was extremely disappointed that my thyroid numbers were, in fact, normal, even by the standards of all the sources that say the ranges should be lower. I had completely convinced myself that is what was wrong. Then, my doctor suggested HLA-B27 disease, and once again, I read up on it and totally convinced myself I must have PsA or AS. But no. In fact, the rheumatologist decided to retest the HLA-B27 and this time it was negative. So I've now totally convinced myself it's got to be fibromyalgia... but I took sunkacola's advice and re-googled diseases that have similar symptoms as fibromyalgia. Specifically, I'm looking for conditions that have my rib cage pain amongst the symptoms. The two biggies that haven't been ruled out yet are fibro and MS. I have seen MS come up before and I always dismissed it as being a possibility. But I forced myself to read up on it more and, well, it's a maybe I'm going to have to make myself ask about. I just might be experiencing the MS hug.

Another problem I have is that everything I am experiencing is starting to feel normal. I am losing my ability to discern whether my symptoms are really that bad. It's not normal to have back pain and sore legs and arms after shopping in a department store for two hours, right? Even if it's dress shopping with a tween girl? I'm 47. I had to rest for an hour and a half after we got home before I could even think about getting up to warm up leftovers.
 
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. It's not normal to have back pain and sore legs and arms after shopping in a department store for two hours, right? Even if it's dress shopping with a tween girl? I'm 47. I had to rest for an hour and a half after we got home before I could even think about getting up to warm up leftovers.
no, it is not normal. you should not feel pain after clothes shopping, even if it was with twin toddlers and trying to wrangle them & keep them out of trouble.

I do totally get what you mean tho.. the things that we live with on a daily basis become the "new normal" to us.
 
I recognise a lot of what you describe so it will be interesting to hear what your doctor diagnosis you. I’m sometimes just like you from one side to the opposite sides and i sometimes think is it all in my head despite being diagnosed years ago. Good luck. Nan x
 
I am losing my ability to discern whether my symptoms are really that bad. It's not normal to have back pain and sore legs and arms after shopping in a department store for two hours, right?
Ah, sigh.... reminds me of asking my wife last year, half in disbelief, half knowing, if it isn't normal to have had pain my whole life, and if others, she, don't have pain all the time...
It was her that shoved me to the rheum. to start getting looked at in depth, after my GPs just agreed with me ..: yeah... might be fibro.... none of us really knowing what the heck it actually is...
 
Well slowly but surely I think I am getting closer to a diagnosis. Saw my GP last week to get a referral to a neurologist so I can rule out MS. He didn't sound very confident that is what I've got (which is good but I'm not taking chances, you always hear horror stories of missed diagnosis). I asked about fibromyalgia, he said I need to ask the rheumatologist when I have my follow up, but that must be what he's thinking is going on because he started me on an SSRI, escitalopram. He said it was for CF/FM, but I was disappointed to go home and google it and learned that it isn't considered very effective for either. I was upset at first, but thinking it over I am pretty sure he was thinking to start me on something that is considered mild before jumping into the others that are more known to have bad side effects. (Also wondering if doctors are allowed to prescribe duloxetine without diagnosis??).

Had my rheumatologist follow up visit yesterday. Got my official "we didn't find anything wrong". I asked about fibromyalgia, she said that is what she would suspect is my problem but they don't treat that, their clinic only treats degenerative diseases, so I have to ask my GP about it. Sigh.
 
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Taking SSRI medication helps some people, but not the majority of people with fibro.

I recommend that you try all of the non-medication things that you can (see my post on this) before you start taking medication that might give you strange side effects or even worsen your symptoms. There are so many good things to try, it makes sense to give that a go rather than jumping into taking medication that may do more harm than good. Medication really should be more of a last resort than a first go-to.

Doctors generally can prescribe anything they want to regardless of diagnosis or not. Many do just that, thinking the patient can try this, try that. That is, after all, what medical school trains them to do. But that is often not a good approach with something like Fibromyalgia. And believe me, you can get on a merry-go-round, (not a very merry one), of taking different medications to stop the side effects of some other medication, going through withdrawal from medications that are doing you harm, and experiencing one after another set of side effects, not knowing whether some of them are even caused by the drug or not. I recommend that you avoid this and at least give the other methods a good try.
 
totally agree about trying the non-medication routes first.

i was tried on several different meds, duloxetine being one of them, and none of the more common ones actually provided any relief. They wanted to try me on Lyrica, but I flat refused to take that one due to the potential side effects - its cousin, gabapentin, was bad enough, thanks.

I have gotten more relief, in general, from things like dietary changes and gentle stretching/exercise than i have from any medications.

I had an appointment recently with a pain management specialist and she wants to look at nutritional deficiencies that could potentially cause pain signal amplification - mostly in the B vitamin family (B vitamins are related to nerve function)... but also checking things like Vit D (which has been deficient in the past) and iron.. will have to see how that goes. have labs on the 17th...
 
I started doing Pilates every morning. Usually just 10-15 minutes, try to do 30 on the weekends. It helps tremendously. Sometimes it seems like my muscle soreness is a direct result of the workouts. However, I've been pretty consistent for several months so seems like at some point I should have stopped experiencing the exercise-induced soreness.
Hi -
I am not trying to add a dx here, but do a little reading on PEM. You may need to cut back on your Pilates times, and SLOWLY rebuild. PEM is a recent discovery, so drs aren’t really on board yet. Do an online search specifically for an article about exercise being “bad medicine” for long covid patients. I would love to post the actual link, but I think that’s not allowed.
 
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